* I am not entirely sure if coconut, sunflower oil, and sesame oil are 100% safe. They are minor ingredients in some of her safe foods, although they haven’t been trialed in significant amounts. I would imagine they are, but the problem with FPIES is that every child is different. Some may be able to handle things in minuscule amounts and need a LOT to have a reaction, while others can’t handle trace amounts. I am going to take it for what it’s worth, though, and think that they may be a pass in greater form.

Recommended Prepackaged Foods for FPIES

Like I said before, some children react to minor traces, while others do not. Sometimes companies can have contamination incidents, leading to reactions. But these are the foods/companies that I have had good luck with.

Arrowhead Mills Puffed Corn Cereal (Processed in the same facility with triggers, but have luckily [knock on wood] not had any cross contamination issues. Does it taste good? No. It’s pretty flavorless. But, Kate doesn’t seem to mind. She loves her “popcorn”.

Kix Cereal - This is one of our big staples and she loves it. Has to be the regular flavor, though. We haven’t tried the others, yet. She may be okay with Honey, but it hasn’t been trialed yet.

Brothers-ALL-Natural Fuji Apple Crisps- (Apples, Pears) – The downside is that these go quickly and they aren’t exactly cheap. Freeze dried fruits are a family favorite, though, and not just a FPIES child favorite.

Mrs. Leeper’s Pasta Organic, Corn Rotelli – Just corn and it tastes just like the “real” thing. Katie calls this her “beebaf”. Not sure why she can’t actually PRONOUNCE “pasta” but it’s cute, all the same.

When Kate passes most of the high-risk FPIES reactor foods, as well as having many passes under her belt, then we will introduce her two previous fails, rice and oats.

Kate’s current stats are: 29″ tall and 20lbs. She was stuck at 15-17lbs for the longest time (at least a year.) It is only recently that she has been gaining weight. This means that she is not even on the chart for her height OR weight. The doctor has said that according to her height/weight ratio, she is where she should be, though. Just not height/weight for AGE.

We saw an Endocrinologist last year, to which they made me feel as if I was starving her and that she was “too old” for breast milk and I needed to just “feed her more”. Ah, the American way. The geneticist said that she was more or less “idiopathic short stature”. Meaning there is no real TRUE on the dot explanation for her slow growth. The endocrinologist seems to believe that her body just needs to “turn on” to correct some faulty wiring in regards to her growth hormone “pathways”.

Both agree that she should do growth hormone therapy.

That was last year. I actually called the endocrinologist’s office to make an appointment and the receptionist made me feel like I was an awful parent because I haven’t been there in a year. Last time I was there, he said he wanted to “wait and see”. I am sorry if I do not feel like making an appointment every few months and paying specialist fees just to be told, “Okay, we’ll wait some more.” So until I noticed more growth or until time has passed without significant amount of growth, I didn’t think it was necessary to drive all the way out to Downtown Orlando, pay a bunch of money, to be told what I already know.

Is that really so wrong? Especially if he gave me a specific time frame of waiting? He had mentioned to wait until she was past two, and possibly closer to 3. Okay, that is where we are at now. She is 2 years and 4, almost 5 months old.) I would say that is somewhere in the midst of his recommended time frame.

Now knowing that we will probably start hormone therapy ($$$$$$$$$$$) in the year 2013, I started searching for some blogs. There had to be other “mom blogs” out there that involved having and dealing with a child with idiopathic short stature. There are dozens of blogs on the most rare of disorders, but I could only find ONE blog dealing with idiopathic short stature. The rest of the web seems to think that growth hormone therapy for idiopathic short stature is unnecessary and vain and that insurance SHOULDN’T cover treatments.

Fuck-tards.

Yes, I said it. You prevent my kid from being able to do normal tasks like riding a bicycle, washing her hands in the sink, and opening doors and possibly having children of her own some day (untreated growth disorders can sometimes stunt or completely avoid puberty) just to name a FEW — then you’re messing with the wrong Mama Bear. My sweet girl deserves all the same opportunities, especially if its as simple as supplementing her hormones to help her achieve that normalcy.

Comments

First, I am glad Katie is doing well with some new foods and starting to show some weight gain. My niece was affected by FTT and she was stuck at 18lb for what felt like ever. My sister wanted to throat punch people when they commented, “She’s so tiny” or “She’s so small.” Once I made the error of calling my niece “Skinny Minny” as I was helping her pull her pants up (she was 3 at the time, and had to wear a belt because everything fell off). She informed me that she wasn’t skinny, she was thin and her Mom said that thin is okay. Fast forward ten years, and my 13 year old niece is beautiful and brilliant. Keep being the Mama Bear, Katie needs it. Children whose parents are strong advocates for them typically become strong advocates for themselves. (((Hugs))) and keep us posted on what the endocrinologist says. Please don’t throat punch the receptionist. Virginia from That Bald Chick´s last blog post ..Cutest Christmas Cards Ever!

So glad. As a parent of a special needs kid, I always hesitate to say anything because I know that even the right words at the wrong moment can cause a mommy melt.Virginia from That Bald Chick´s last blog post ..Cutest Christmas Cards Ever!